I’d be dead if it wasn’t for Medicaid, which I didn’t get until I was dying at 25.
And they cut me off. Me, a double amputee who struggled to find work. They cut me off because in their words, I wasn’t “mentally incapacitated.” Whatever the hell that means.
Most relatively young and healthy people won’t know what I'm talking about. Not personally anyway. Not unless they’ve seen a grandparent get sick, or one of their peers. But I know first hand.
I’ve had 4 heart attacks,
several dozen strokes,
been paralyzed from the neck down
recently lost both legs and one knee
Did I do anything to make those things happen? Nope. I just have a very particular kind of Lupus that does what it wants, when it wants, how it wants.
Doctors say I’m lucky I’m still here.
My coverage has been “conditional” for the last few years, since Medicaid judges pools based on national costs instead of individual need.
I was told that because of people who didn’t have enough to pay their rent, they couldn't count my situation. I’ve been paying my rent and bills all along. So how is it my fault that I don’t qualify for full help, because I pay my own rent and I’m not in public housing or don’t have kids yet? How is that fair or right?
Trumpicana has shown us he doesn’t respect or care about disabled folks.
Since he mocked a disabled reporter a year ago before he was president, and has let the Republican Party gut Medicaid, social security and a good portion of programs that us “less fortunate” victims of circumstance need, Trump has shown every American and the world who he is. An orange asshat that needs a reality check.
Now, I know there are folks who lost limbs and became sick from being unhealthy, as Tom Price has reminded us in countless news conferences. I’m not one of those people AND you have to have serious health issues to get full Medicaid. And diabetes is still a disease that many people have, not from unhealthy eating, but genetics. And where diet is a factor, that’s often systemic.
I know the Medicaid expansion put a lot of low-income people on it as well. At one point, I was both low-income and disabled.
Now I’m just in the disabled section, since I’m not a starfish and my legs won’t grow back.
Is it my fault that I have an autoimmune disorder, Lupus, that also happens to be a rarity in that area? Not at all.
It killed me to stop working when I stopped.
It continued to annoy me to live on a fixed income because of it.
And it continuously annoyed the hell out of me when I got rejection letters or no response when applying for jobs. Sorry Kellyanne Conway, folks aren’t taking a chance on disabled folks when it comes to hiring.
I work some place that understands that my Lupus does what it wants, not necessarily what I want.
I’ve learned after 16 years with it that I need to rest when my body is pushed too hard. And that most able-bodied people will never understand how hard it is for me to seem okay when I’m clearly not.
I’ve mastered blank face, resting bitch face, and laughing/ignoring in the face of my pain.
Some nights though, all I can do is lie there and cry or whimper, while my boyfriend lies next to me. Comforting me. Never knowing what to do.
I tell him to become a scientist and transfer my consciousness into a better body.
He says he likes the one I have.
I say, well, you asked.
On days when my Lupus has had enough of me, all I can do is stay in bed and do whatever I have to do from there if I can. Because if I don’t, I’ll be back in the hospital for the millionth time.
And I don’t want that, since I’m not a fan of hospitals and insurance in the US isn’t understanding of my current situation.
Funny, that. Born and raised in NYC and yet, not fully taken care of.
My job’s insurance doesn’t cover prosthetics fully. So I’m on Medicare. I pay $166 every month and still have to pay 20% extra because of the “extra” money I’m making.
How messed up Is that?
And when you don’t get full coverage, you have to decide between eating and medication, paying rent and paying bills, going to the doctor and going to a job interview.
How is that right?
For those who don't know, Medicare is usually designated for elderly folks, over 67, since they may have an increase in medical care and medication. But there are folks like me who are considered long term. We qualify, especially if we were working before and can potentially work again.
Medicaid is for low-income folks. That means many disabled and elderly people get both.
Some of us don’t qualify for both — like healthier older people, or healthy people who are just poor or have kids.
I think we should have Medicare for all.
But Republicans don’t give a crap about people like me: Disabled, woman, Black, Native and Palestinian, low-income and getting out of poverty — I love God and because of all of that: revolutionary.
It’s a common misconception that people on disability, Medicaid or food stamps are lazy and don’t want to work.
Of course we want to work.
But most places won’t take a chance on a “liability” like me. No matter the experience or education or whatever they get with me.
Folks who think I should be okay with working in a low wage job like fast food can kiss my ass.
I’m not demeaning folks who work there but I didn’t go to college because I had dreams of working at Taco Bell.
In the past, folks let me know that the gaps on my resume didn’t work for them. And when I say I had health stuff, they “kindly” reply with a “no thanks” or “they’ll look elsewhere” — when there was literally nothing I could do at the time.
I’m lucky that my job took a chance. And after a few months, it’s worked great. They care that I’m both valuable and sick, and work with me.
A social worker who insisted on meeting in person told me that I can't make anything over $10,000.00 a year if I want to keep my Medicare and partial Medicaid.
I guess she wanted to make sure I’m still not a starfish and that my legs still didn’t magically grow back.
In any case, that isn't what Medicare or Medicaid told me on the phone. They said I'd just pay extra for my Medicare and not get cut off.
Since I’m still technically disabled, my Lupus and corresponding issues haven’t gone anywhere.
And being asked these repetitive questions just get on my nerves.
Just as Access a Ride in NYC doesn’t have the same info for the dispatchers, operators and drivers, neither do Medicare, social workers or insurance companies.
Access-A-Ride is a paratransit company that is used like buses and cabs around the city for disabled and elderly people. We pay for it and they provide shitty service. That’s part of my new job: to make it better.
Why is it a crime to be disabled in the US? Why do they, and I mean the US government they treat us like the enemy?
I was born and raised in Queens, NY. But my country treats me and other people like me as third-class citizens. Why?
What the hell did I pay taxes for when I worked before and now that I’m working again?
What are my brother and sister working for?
What are other Americans working for? Some fake ass American dream?
This is what I’m working towards.
This is what my future children will get? WTF is that?
This isn’t the America my dad came to — and subsequently died from — for his kids. My dad died of a heart attack 18 years ago at the age of 40. His American dream had become a nightmare and it took him out.
And this is not the America my mother grew up in.
I’m going to fight every damned day to make it better. I don’t want reality to be like Terminator Apocalypse in the future. My legs are mechanical. I’m not.
I’m their worst enemy. I’m everything they don’t like. But the people like me and that counts. Bigly.
I don’t care what the elite want.
I'm here, I’m American and I’m an adult. I might have two metal legs and one mechanical knee but I’m still human.
I have rights.
I deserve help from my government. I work hard. I want to build something for my family and myself.
If these Republicans are pro-life, it shouldn’t stop at the womb. It should mean all of us. Period.
After all, that’s what Jesus would do.
Eman Rimawi is a Black, Native American and Palestinian woman who lives in NYC and began writing poetry and prose early in life.
Her natural creativity steered her towards becoming a spoken-word artist, educator and youth organizer for dozens of non-profit organizations in New York City, including: The Audre Lorde Project, FUREE, Casa Atabex Ache and The Jed Foundation. She went on to teach creative writing, community organizing, history and political science workshops to youth in New York.
Eman has been focused on organizing around disability rights and staying true to her passion for community connectedness and proven strength. She started Amped Up, an organization that helps disabled people to be creative and live lives they love; through fashion, creativity and social gatherings. She is putting out graphic novels and children's books where disabled people are the main characters, and is facilitating workshops to support businesses who employ disabled people to better support and interact with their staff.
Eman joined NYLPI as its Access-A-Ride Campaign Coordinator and Organizer. She will be organizing around making Access-A-Ride better for its customers.